Dining In The Dark: Hope for Retinal Disease

Of the first dozen times or so that I ever saw Joel, my then future brother in law, I think we were in a restaurant a good four or five times. This was probably just a chance event, but there were a number of dinners and one lunch with the family that Joel and Alyssa (Amanda's sister) attended. And I noticed something. Joel and Alyssa seemed to be very keen on the idea of consulting over what to eat. Many couples do this, including Amanda and me. For example, if there are two items on the menu that I know I'd be happy with, and Amanda is pretty sure about one but not the other yet wants to try it, we'll get those two, with the idea that we can either share them or switch them later. So for all these visits to the restaurants, I had assumed Joel and Alyssa were making some sort of similar arrangement, and it was kind of cute.

After several weeks I learned that Alyssa was actually reading the menu to Joel because he was blind. I had no idea.

Joel has a form of macular degeneration. About 10 million people have retinitis pigmentosa, macular degeneration, Usher syndrome or some other form of retinal degenerative disease. One might spend a very long time unable to see well enough to drive or read regular text. Joel is a banker and investment analyst, and recently completed an advanced degree at the Carlson School of Management, so of course he reads a lot, but does so with assistive technology not generally available with restaurant menus. Depending on one's particular form of retinal disease, the blindness may progress or not, or if it progresses, it may do so more or less quickly or more or less to a state of total blindness.

One of the frustrating and annoying things about this category of disease is that it is on the short list of "probably curable with stem cell technology." Maybe not all forms of retinal disease can be cured with stem cell implantation or therapy, but it makes sense that many can. This is because the highly specialized cells that make up this part of the visual system were already there, but have subsequently broken, fallen away, or otherwise stopped working. Stem cells can be thought of as undifferentiated parts that learn what to "be" when they "grow up" by context. It would be like putting an undifferentiated piece of substance in a place where your car's engine is broken, and the substance feels around and realizes it is where, say, a head gasket is supposed to be, so it becomes a head gasket. Since a person with a retinal degenerative disease had or has all the parts, stem cells can find their way to where they are supposed to be, and develop in to the appropriate bits and pieces to restore vision.

This is annoying and frustrating because stem cell research was essentially halted for years by a lack of respect for separation of church and state. Had that not happened, people who are now in their 20s or 30s would not have to wait until they were 50 for a cure. We would be there already.

This has been done experimentally with good results. There is significant hope that these diseases, or at least a subset of them, can be cured or at least very effectively treated. (We won't argue here about what "cure" means; we are speaking of a complex of diseases and disorders so that would not be productive.)

I'm planning to write up some peer reviewed research on stem cells and retinal disease at a later time, but for now I'd like to tell you about something more immediate that you should get involved in if you happen to live in the Twin Cities.

There is an event that is run by a group called "Foundation Fighting Blindness" in which people get together and have a nice dinner in a restaurant. I assume there is a speaker or two, and they probably have the chef come out and talk about the food, and so on and so forth. I'm pretty sure it is a well designed multi-course dinner well paired with appropriate liquid refreshments.

But there is a catch. You have to, well, eat blind. You are fitted with blindfolds, or they turn the lights off, or otherwise make it impossible for you to see. I'm sure this is very funny in a lot of ways, because people who have regular run of the mill vision are pretty hopeless when they can't see. I'm reminded of training I did in Africa to find my way around in the dark, in order to be able to survive those not too infrequent situations when that occurs. (Did you know the rain forest floor glows at night?) I'm also reminded of that old story about the blind golfer ... he had won a tournament and Arnold Palmer was giving him his trophy. Palmer said "I'd love to golf with you any time" and the golfer said he'd be happy to, and why not make it a bet? "The winner gives ten thousand dollars to the Blind Golfer Foundation," he suggested. Feeling rather safe about that particular wager, Palmer instantly agreed and said "OK, when and where?"

"At this golf course, next Tuesday. At midnight."

(Feel free to challenge the veracity of that story or to provide corrections.)

The point is this, for a mere few bucks, you can do three things: 1) Have a nice meal; 2) Have a unique experience; and 3) Donate some money to a cause where research is actually hopeful! (And let us hope Santorum does not become the President, because that would end further stem cell research on day one.)

Please consider going.

The details are as follows:

Inaugural Twin Cities Dining in the Dark Offers Glimpse into the
Lives of the Blind to Support Sight-Saving Research

Mayo Clinic Professor and Insurance Industry Leader To Be Recognized with Visionary Awards

Minneapolis, MN (February 22, 2012) -- The Foundation Fighting Blindness, a national nonprofit focused on sight-saving research, will open guests' eyes to the challenges of the visually impaired community at its inaugural Twin Cities Dining in the Dark on Wednesday, May 23, at the Marquette Hotel. The Foundation's Visionary Award will be presented to Raymond Iezzi, M.D., M.S., associate professor of ophthalmology, Mayo Clinic; and Matt Clysdale, president, Maguire Agency, to recognize their accomplishments and dedication to the fight against blindness.

Dining in the Dark is a distinctive sensory awareness experience in which guests participate in an unforgettable dining adventure, in complete darkness. To get a glimpse into the lives of the blind, diners will wear special light-blocking blindfolds and enjoy their entrée using only their heightened senses of smell, sound, taste and touch. The unique event will benefit cutting-edge research into preventions, treatments and cures for vision-robbing retinal degenerative diseases like macular degeneration, retinitis pigmentosa (RP), Usher syndrome, and related conditions.

Chairing the event are Julie Anderson, of Maple Grove, MN, and Mark Valenziano, of Minneapolis, MN, who are both affected with retinal disease and have passionately supported the Foundation's mission for years as chapter and VisionWalk leaders in the Twin Cities area. "We're so thrilled to bring this impactful Dining in the Dark experience to Minneapolis," Anderson says. "Not only will the evening raise valuable awareness about the challenges more than 10 million Americans, including myself, face on a daily basis, but we're fortunate to recognize two visionaries as we generate critical funds for research."

Visionary Award Honoree and Mayo Clinic Associate Professor of Ophthalmology Dr. Raymond Iezzi, of Rochester, MN, specializes in retinal and vitreous diseases of the eye. The Foundation has funded his research in the past, and Dr. Iezzi has lent his expertise as a speaker at local Foundation chapter meetings. Also being recognized with the Visionary Award is Maguire Agency President Matt Clysdale, of Rosedale, MN, who has over 20 years of insurance and management experience. His admirable example of accommodating a visually impaired employee to allow her to continue working demonstrates his commitment to inclusion in the workplace. He's also been honored with a Business Journal 40 under Forty award, and was named Agent of the Year in 2007 by the Minnesota Independent Insurance Agents and Brokers.

Twin Cities Dining in the Dark, Benefiting the Foundation Fighting Blindness

Wednesday, May 23, 2012
Reception at 6 PM
Dinner and Awards at 7 to 9 PM

The Marquette Hotel
710 Marquette Ave.
Minneapolis, MN 55402

Website Here

Individual tickets are available for $250 each and sponsorship packages begin at $2,500. For ticket and sponsorship information, contact Events Manager Michele DiVincenzo at MDiVincenzo@FightBlindness.org or (847) 680-0100. To RSVP as a member of the media or to coordinate an interview with an event spokesperson, contact Allie Gebhardt at (410) 423-0643 or AGebhardt@FightBlindness.org.

About Foundation Fighting Blindness
The Foundation Fighting Blindness is a national nonprofit driving research that will lead to preventions, treatments and cures for retinitis pigmentosa, macular degeneration, Usher syndrome and the entire spectrum of retinal degenerative diseases that affect more 10 million Americans. In its 40-year history, the Foundation has raised more than $450 million as the leading non-governmental funder of retinal research. Breakthrough Foundation-funded studies using gene therapy have restored significant vision in children and young adults who were previously blind, paving the way for using this method to treat a wide variety of retinal degenerative diseases, and proving a cure is in sight. With a network of nearly 50 chapters, the Foundation also provides support and resources to affected individuals and their families in communities across the country.


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Stem cells are ânon-specializedâ cells that have the potential to form into other types of specific cells, such as blood, muscles or nerves. They are unlike "differentiated" cells which have already become whatever organ or structure they are in the body. Stem cells are present throughout our body, but more abundant in a fetus.
Medical researchers and scientists believe that stem cell therapy will, in the near future, advance medicine dramatically and change the course of disease treatment. This is because stem cells have the ability to grow into any kind of cell and, if transplanted into the body, will relocate to the damaged tissue, replacing it. For example, neural cells in the spinal cord, brain, optic nerves, or other parts of the central nervous system that have been injured can be replaced by injected stem cells. Various stem cell therapies are already practiced, a popular one being bone marrow transplants that are used to treat leukemia. In theory and in fact, lifeless cells anywhere in the body, no matter what the cause of the disease or injury, can be replaced with vigorous new cells because of the remarkable plasticity of stem cells. Biomed companies predict that with all of the research activity in stem cell therapy currently being directed toward the technology, a wider range of disease types including cancer, diabetes, spinal cord injury, and even multiple sclerosis will be effectively treated in the future. Recently announced trials are now underway to study both safety and efficacy of autologous stem cell transplantation in MS patients because of promising early results from previous trials.
Research into stem cells grew out of the findings of two Canadian researchers, Drâs James Till and Ernest McCulloch at the University of Toronto in 1961. They were the first to publish their experimental results into the existence of stem cells in a scientific journal. Till and McCulloch documented the way in which embryonic stem cells differentiate themselves to become mature cell tissue. Their discovery opened the door for others to develop the first medical use of stem cells in bone marrow transplantation for leukemia. Over the next 50 years their early work has led to our current state of medical practice where modern science believes that new treatments for chronic diseases including MS, diabetes, spinal cord injuries and many more disease conditions are just around the corner.
There are a number of sources of stem cells, namely, adult cells generally extracted from bone marrow, cord cells, extracted during pregnancy and cryogenically stored, and embryonic cells, extracted from an embryo before the cells start to differentiate. As to source and method of acquiring stem cells, harvesting autologous adult cells entails the least risk and controversy.
Autologous stem cells are obtained from the patientâs own body; and since they are the patientâs own, autologous cells are better than both cord and embryonic sources as they perfectly match the patientâs own DNA, meaning that they will never be rejected by the patientâs immune system. Autologous transplantation is now happening therapeutically at several major sites world-wide and more studies on both safety and efficacy are finally being announced. With so many unrealized expectations of stem cell therapy, results to date have been both significant and hopeful, if taking longer than anticipated.
Whatâs been the Holdup?
Up until recently, there have been intense ethical debates about stem cells and even the studies that researchers have been allowed to do. This is because research methodology was primarily concerned with embryonic stem cells, which until recently required an aborted fetus as a source of stem cells. The topic became very much a moral dilemma and research was held up for many years in the US and Canada while political debates turned into restrictive legislation. Other countries were not as inflexible and many important research studies have been taking place elsewhere. Thankfully embryonic stem cells no longer have to be used as much more advanced and preferred methods have superseded the older technologies. While the length of time that promising research has been on hold has led many to wonder if stem cell therapy will ever be a reality for many disease types, the disputes have led to a number of important improvements in the medical technology that in the end, have satisfied both sides of the ethical issue.
CCSVI Clinic
CCSVI Clinic has been on the leading edge of MS treatment for the past several years. We are the only group facilitating the treatment of MS patients requiring a 10-day patient aftercare protocol following neck venous angioplasty that includes daily ultrasonography and other significant therapeutic features for the period including follow-up surgeries if indicated. There is a strict safety protocol, the results of which are the subject of an approved IRB study. The goal is to derive best practice standards from the data. With the addition of ASC transplantation, our research group has now preparing application for member status in International Cellular Medicine Society (ICMS), the globally-active non-profit organization dedicated to the improvement of cell-based medical therapies through education of physicians and researchers, patient safety, and creating universal standards. For more information please visit http://www.neurosurgeonindia.org/